Systematic archiving and access to health research data: rationale, current status and way forward.

ByManju Rani, Brian S Buckley

ARTICLE ABSTRACT

Despite repeated global calls for increased investment in health research, securing investment can be challenging, especially in developing countries where research may compete with health service delivery for funding and personnel. Advocacy for increased investment can also be undermined by stakeholders’ doubts about the efficiency and effectiveness of research, by failure to realize the potential of previous investment due to the poor utilization of research outputs and by a low level of public trust in research. In this context, some way of increasing the accountability, efficiency and effectiveness of research is needed. In addition to universal clinical trial registration and open access to publications, two closely linked strategies have considerable potential: the systematic archiving of unaggregated data generated by research studies and wider access to databases. Both would facilitate the secondary use of data within and, preferably, between countries.

In recent decades, there have been several high-level initiatives advocating the routine archiving and sharing of health research data. The rationale for this is both scientific and economic. Sharing data facilitates reinforces the collaborative and cumulative processes involved in creating scientific knowledge. It can also promote new research and enable the testing of new or alternative hypotheses. For example, combination and meta-analysis of databases can allow researchers to examine trends through time and between regions. In addition, archiving and sharing data can increase the transparency and accountability of research and bolster its reliability and authority by enabling other investigators to repeat or extend analyses. Since data collection is often a significant and expensive aspect of research, ensuring that databases can be used repeatedly increases the financial return on research investment by reducing the possibility of data duplication.

Despite these benefits, systematic data archiving and sharing are not yet the norm, especially in low- and middle-income countries. Moreover, many health research databases are not efficiently cleaned, managed or used, even by primary researchers, and often data are stored informally by institutions or individual researchers, which makes secondary use impossible. Systematic and secure data archiving can ensure that these valuable resources are available for answering future public health questions.

This paper discusses important developments in data-sharing policy and highlights factors in health research that may affect policy implementation, with particular reference to countries in the World Health Organization (WHO) Western Pacific Region. In addition, practical strategies for fostering data sharing are considered.